ALS AND FAMILY FUNCTIONING

ECU Author/Contributor (non-ECU co-authors, if there are any, appear on document)

Rachel Williams (Creator)

Institution

East Carolina University (ECU )

Web Site: http://www.ecu.edu/lib/

Abstract: Amyotrophic Lateral Sclerosis (ALS) is the most common progressive and fatal neurodegenerative disease and yet a cure remains unknown. Given the growing number of patients with ALS, it is imperative that behavioral health clinicians, medical providers, researchers, and policy makers are aware of their and their support persons" unique biological, psychological, social, and spiritual health concerns, the impact of the disease on family functioning, and the general care management of those living with ALS. This dissertation was written to help identify the impact of ALS on patients and their support persons" family functioning and biopsychosocial-spiritual (BPS-S) health. It includes three manuscripts: (a) a systematic review of the impacts of ALS on immediate family members" health and interactional patterns, (b) a descriptive phenomenological study designed to explore the lived experience of eight patients and nine support persons living with ALS, and (c) a perspective piece that presents an argument for requiring increased competencies in medical education and residency education programs around ALS diagnosis, treatment, and family-centered care. The systematic review resulted in 3,557 articles with 3,509 meeting exclusion criteria and 48 meeting inclusion criteria for full review. The articles in the systematic review demonstrated that previous literature on the BPS-S health outcomes of support persons of patients with ALS is disjointed, with the health components studied independent of one another rather than simultanesouly for a comprehensive understanding. The literature reviewed also revealed a limitation in the amount of research that has focused on the impact of ALS on family functioning. The phenomenological study conducted as a part of this dissertation resulted in five themes relevant to patients and support persons" experiences living with ALS: (a) Dynamic transformations of relational systems, (b) Biological changes and well-being, (c) Emotional processes, (d) Impacts on spirituality, and (e) Healthcare system interactions. The novel findings of this study include: (a) a broader understanding of patients" with ALS (PALS) and SPs" experiences with the impact of ALS on family functioning due to the inclusion of multiple participants in the same interview; (b) participants explanation of progression of physical symptoms and subsequent decrease in verbal communication abilities resulting in a more isolated and frustrated state; (c) participants reporting on their ability to reach acceptance and choose positivity; (d) and the participant"s expressing the need for medical providers outside of ALS clinics to have increased knowledge of proper ALS care. It is then recommended that future research should focus on the immediate and longitudinal whole health needs of PALS and SPs and their interactional effects, participant"s perspectives on the lack of knowledge by non-ALS specialists, and studies that continue to include multiple family members and SPs conjointly with the PALS to ensure that more robust systemic perspectives are represented. The final manuscript is a perspective piece based on existing literature in combination with findings from this disseration. It is used to highlight the need for increased education among medical professionals on ALS diagnosis, interdisciplinary treatment, BPS-S and family-centered care

Additional Information

Publication

Dissertation

Language: English

Date: 2020

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